Daughter with emergent condition continued....

[BeeRae22]

I posted awhile back about my dd, (recently turned 8) that has suddenly stopped eating. Everything- except home baked bread, and choc ice cream. She will drink milk and juice also. This has been going on for almost 3 months now.

 

I am trying to streamline my time line, re: doctor's appts, restricted eating, and other symptoms. I am a little blurry because at one point I had been taking her to the doctor for frequent stomach aches, and then later for the restricted eating.

 

I finally brought her to the pediatrician again last week, having gotten nowhere with the feeding team/hospital, and told the ped that I think she has PANDAS. A first he seemed to not know what we were talking about, and then said Oh, yes, pandas- that's a real disease. I was so relieved, since I didn't think I was going to make any headway re: pandas with a regular ped. He ordered bloodwork for strep, and Lyme at our request (although he claims that Lyme has a "bad rap" and there's "no such thing as chronic Lyme" (yikes! Really?,) and a bunch of other tests, and we were on our way.

 

So, that was on Friday. Over the weekend I couldn't sleep for thinking about all of this, and have been panicking since. Dd's symptoms have been getting worse rapidly. She's recently had a couple of episodes of outbursts of pure rage which were scary and sad and horrible. We are walking on tip toes around her, not knowing what's going to set her off. So, Monday morning we brought her for the bloodwork. Tuesday I called the ped again to ask a few questions... They went like this:

 

Me- would you be willing to start her on antibiotics while waiting for test results?

Ped- no, I don't want to expose her to antibiotics when we don't know what it is

Me- have you ever treated someone with pandas before?

Ped- oh yeah, but with the peeing thing, not the eating thing. (EATING "THING?!?!" Seriously? My dd only eats bread and ice cream, and you're referring to that as an eating thing?)

 

I've come to discover that this ped's confidence WAY exceeds his abilities. He "doesn't need to talk about her other symptoms, including the ocd symptoms???? How can this guy even suggest that he is capable of diagnosing and treating this condition??? Aren't the other symptoms, along with the "eating thing" just as important in diagnosis??? Is it me???

 

So, this leads me to my big question.... How far back will a strep test indicate strep having been present in the past? I have been trying to pinpoint exactly when this started, and my best guess was that it was mid October. (In regard to the "eating thing" anyway). If her restricted eating started a few weeks after the strep infection, (which from what I've read it sounds like that's possible) than couldn't she have had strep as long ago as September? Will the test reflect an infection that started that far back? I'm not sure how that all works.

 

I have an urgent call in to Dr M and have been told that we will get in by the end of the month. I want to continue to try to get in with Dr B but have not had any success yet. In the meantime, I am terrified. It is all we can do to keep enough calories in her to keep her going at this point.... She is down approx 10% of her body weight and was tiny to start with. I am so anxious to get this test back, but am not a bit confident that the ped knows how to interpret it. I wish he would give her antibiotics in the meantime, but he won't.

 

Any advise, suggestions appreciated. Anyone know of a ped in CT willing to help while waiting for a specialist? All I want here is to start her on antibiotics. Doesn't seem like too much to ask. Se hits all the markers for pandas... Absolute, major and minor. I am 99% confident that this has to be what's going on. Why can't I get any help, before she ends up in the hospital or collapsing? This is completely crazy, 3 months ago my girls was happy, healthy, loved school, etc. and now she's not eating, picking her fingers raw, having rage episodes, sensory issues, depression signs, anxiety, etc. and getting worse all the time.

 

Can't someone (who knows what they're doing!) just HELP US?????!!!!! Please?

[Rachel]

I have also been trying to track down a positive strep test on my ds but never could. When your daughter first got sick or even six months before it began was a strep test ever done. If a test was done, you should be able to get a copy of the result. The strep titer test is also another possible test that could be run but I think it has to be done within 2-3 monthes of the suspected infection. I am very new to the PANS/PANDAS diagnosis. I've been researching and trying to understand how this is all diagnosied. Wish you the best with your daughter.

Rachel

[pr40]

this may or may not be PANDAS, however. and strept test, even if IGG is positive will not tell you much beyond the fact that she was exposed to strep. so, yes, I think you are right to seek an apt with a PANDAS specialist. If it were me, I would give pedi what he needs to prescribe abx. that is, I would tell him, she goes to bathroom every five minutes.

but, also, abx alone will not be sufficient to change your child's eating habits. you need to modify behavior. CBT is one option.

[BeeRae22]

What is CBT?

 

I don't know that he would believe me at this point if I suggested that she is now going to the bathroom all the time.

, right after I asked him to start her on antibiotics. As desperate as I am at this point, I'm not ready to start fabricating symptoms.....

[BeeRae22]

He ordered the titer strep tests, she was never tested for strep when this started, but I do remember her being sick, with a cough/sore throat around the time that this started. I haven't been able to find any other diseases or syndromes that might account for sudden restricted eating/anorexia in an 8 yr old child. PANDAS seems like the only reasonable diagnosis, particularly with the sudden severe ocd symptoms paired with it..... If I could come up with something else I would-- this feels like a never ending nightmare that's only just begun.

 

I am concerned that if she tests negative for strep, which sounds likely, than we'll be back to square one and have gotten nowhere. I asked Ped what "plan B" would be if the results were negative, and he was talking about going back to GI, counseling, OT, etc. which we have already exhausted (in my opinion). He does not believe that this could be Lyme related in any way either, so if she tested + for Lyme, I'm not sure what his suggested course of treatment would be either.

[BeeRae22]

Actually, I need to revise something in my posts.... Dd doesn't have anorexia, (as far as I know) since, by definition anorexia is an irrational fear of gaining weight and/or distorted body self-perception.

 

Dd has sudden fear of eating/choking/swallowing and as a result, has exhibited sudden restricted food intake. No choking incident or anything like that, that we know of.

[qannie47]

I get that you don't want to fabricate, and I don't think right now is the time to start doing so until your results come in. That way, depending on what they show, you can start off with the right meds specific to the infection. You have come this far and now it will be only a couple more days for the blood work results. Hold tight. If they come back normal, hopefully your peds doc will still try a course of abx. When I say course, I mean it could take 30 days before you see results. Hopefully not.

 

You are really in a tough place. I am sorry for that. I agree with pr40 that your daughters eating restrictions are not going to be resolved by just abx. I have not delbt with eating issues, but the people who have in this forum paint a difficult picture. (sorry) You are going to have to tackle that part with other options.

 

I am glad that your peds is a pandas believer, but I can see that he may not know a lot. You need somebody who does. A pandas specialist will have a more educated idea of how to handle the restricted eating. For Pandas children, it seems to be more about choking, odd food beliefs, rather then true anorexia which is more about a distorted sense of their own body to put it in simple terms. Can you push for a phone consult? How about DR. K. He will do a phone consult. It just sounds like waiting for the end of the month is too long at this point.

 

It seems like your daughter is going for soft, easy to swallow foods. Have you tried to turn her icecream into protein shakes? Until you can get her in, I would try an approach where you can at least enrich her ice cream with protein powders. Fruit smooties? Anything soft and easy to swallow? Has she been able to articulate what it is about ice cream and milk and bread that makes them tolerable to eat? I would go online and look for creative ways to add nurtrients to ice cream.

 

best of luck

[MomWithOCDSon]

It's my understanding that the ASO indicator blood test will reveal a strep infection within the last 2 to 4 weeks, while the anti-Dnase B titers indicate a strep infection some 4 to 6 weeks in the past.

 

Anybody want to double-check my memory or correct me?

 

And CBT is Cognitive Behavior Therapy, used for addressing compulsive and obsessive behaviors such as your DD's eating issues. In dealing with OCD, a specific subset of CBT commonly referred to as ERP, or Exposure Response Prevention, has been found to be the most effective therapy.

Edited January 9, 2014 by momwithocdson

[BeeRae22]

thanks. She won't let me do anything to her icecream... in fact, when it starts getting "melty" she stops eating it. She won't drink smoothies, and I've tried blending ice cream shakes, etc. and while she enjoys experimenting and making them, ultimately she doesn't drink them. She won't touch any protein shakes (ensure, boost, etc.) because of the taste, -- I try to add it to the Hershey's Milkshakes that she'll drink (the premade choc milk kind you buy in the dairy section at the store) but if I add the tiniest bit too much, she detects it and won't drink it. Then she starts worrying that I'm messing with her drinks/food so I have to be careful about adding anything.

 

I would like to find a flavorless protein powder to possible add to her pizza sauce that she dips the bread in. I'm afraid that we're getting away from the bread now too though.. last night she hardly ate any of it. She had a 1x bought of diarreaha after dinner though, so I'm hoping that it was just an upset belly that had her eating less than usual. (if that's even possible).

 

I'm nervous about these "phone consults". Do people really do this??? I suppose that it would be worth a few hundred bucks to get her started on antibiotics, but don't like the idea of her not being monitored by a doctor while being on them either-- and I've heard that people have a hard time getting ahold of some of these doctors after the initial phone consults....... I don't want to play doctor with meds of any kind- I want to get her a doctor.

 

I am so scared for my girl. I just want her to be healthy and happy like she was in September.

[MomWithOCDSon]

Beerae -- I can certainly appreciate your desire to have your daughter's condition addressed by a doctor, in person; that's what we've been taught is appropriate and to be expected in this civilized world of Western Medicine. However, unfortunately, this PANDAS/PANS condition is still fighting for recognition and acceptance, so knowledgeable doctors are few and far between, and they are all stretched thin in terms of availability, as well. So those of us who've been on this road for a while have learned to adapt and "think outside the box" a bit when it comes to getting our children care.

 

The fact of the matter is, despite what some doctors and campaigns would have you believe, first-generation antibiotic use (unlike the use of second- and third-generation abx in our food chain via animal feed and poultry and beef products directly) is not all that likely to be the source of superbug production or future resistance in your child. And when accompanied by adequate probiotics, you can help curb any tendencies toward yeast overgrowth or c-difficile.

 

I think what's being suggested is that because your DD appears to be suffering, and her dietary health appears to be increasingly hanging in the balance, securing a prescription for her while you procure the long-term medical help you ideally want, may be critical. So whether that prescription comes from the doctor who will ultimately oversee her PANDAS/PANS care in the long-run, or if it comes from another, more temporary source, is of somewhat lesser importance than being stymied by a stinky, inadequate medical system in terms of helping her sooner, rather than later.

 

In our case, I prevailed upon the pediatrician my son had had since the age of 2 (he was 12 at the treatment date). She didn't have any PANDAS expertise, and she was even skeptical of it as a viable diagnosis. But because she knew him, and knew us as parents, and knew that we hadn't come running to her every couple of months for the last 10 years, asking for prescriptions or whathaveyou, she was willing to give us a trial of antibiotics to see how DS would respond. Her main concern was that she didn't have any protocol for it, so I took her a copy of "Saving Sammy," opened it to the page where Beth describes the treatment protocol Sammy received from Dr. Nicolaides, and asked if she could prescribe accordingly. Her response was that she had taken an oath, first and foremost, to "do no harm," and since she didn't believe a 10-day prescription would do DS any harm, she was willing to try it. In the end, she continued to renew our prescription for nearly 2 full years after that, based upon the progress DS was displaying and the research I dug up and provided her with at every opportunity.

 

So, while I agree that having a PANDAS specialist on your team is ideal, I also think that, with the help of the NIMH's published research, the International Obsessive Compulsive Disorder Foundation's (IOCDF) materials on PANDAS, the resources, research and links available here at ACN, and a good, caring, compassionate, and intellectually curious pediatrician, you can at least put a temporary halt on your DD's deterioration if not begin her return to health overall, now, or at least sooner than you may be able to access one of the experts. If your current ped doesn't meet that criteria, there must be another one in your area who will. Or perhaps, if you have a reasonably good history and relationship with this ped, his unwillingness to prescribe abx is more about ignorance than it is lack of compassion or concern. Many of us have put together entire binders of research and useful information to share with our peds and other caregivers so that they have access to information that may not have come their way previously; it also spares them from having to delegate their time and resources to pulling the research up in order to help that one child out of the 100+ in their practice. If you provide it to them on a silver platter, it does sometimes pave the way.

[Dedee]

Have you tried having someone at the NIMH contact your pediatrician? They will call and talk to him if you request it. You need to make an urgent request to Dr. Swedo via e-mail. Mark the e-mail URGENT DAUGHTER STARVING HERSELF! She or one of her collegues will respond. Make sure it is clear how urgent this situation is and how you can not get any help.

 

Dedee

[Hopeny]

Have you tried seeing if Dr O will get her in? Dr O practices integrative medicine but she is trained in pediatrics. I have a consult with her on Monday if you pm me your name I can ask her if she can squeeze in an emergency case. One other thought is to fax Dr B and tell him it is an absolute emergency. Check in with dr m too if they can move up your appt. my daughter had a food choking issue at her worst exacerbation, too. We used a team of doctors so I wd say keep going at all fronts.,Hang in.

[qannie47]

I can understand your desire to meet in person, but the truth is when I bring my ds in with DR. K, he is not looking all that much at my son. He is talking to me, getting my clinical feedback. While ideal, your doctor does not have to actually be in the same room with your child to give him good medical service in the case of Pandas.

[nicklemama]

Momwithocdson really said it like it is. This is our reality. Unfortunately, you are going to have to change your view of medicine and doctors and doing things "the right way" because it will hinder your quest to get your daughter treated quickly.

 

I had no where to turn and I did a phone consult to start. My son had been suffering for a year with no answers as to what was wrong with him, other than he was suddenly mentally ill. Abx was started and we saw improvement. I didn't see any doctor in person for PANDAS for 6 months.

 

One more thing I would point out, my son has NEVER had a positive throat culture nor titers to strep. Strep is not required for a PANS diagnosis. Strep falls under the PANS umbrella as PANDAS. The only thing cultures and titers are good for is identifying the infection for better abx selection. Other common causes of PANS is mycoplasma, flu, Lyme and coinfections, HHV6.

 

It's a stark reality to wrap your head around. It's not how I thought of medicine at all. My opinion of the corporation called medicine is not very high now.